(upbeat gentle music) And welcome back to "Family Health Matters".

I'm Shelley Irwin.

With me today, those guests.

Christoph Sisson, caregiver.

Glad that you are here Christoph.

Kate Krolewicz, Senior Medical Assistant in Neurology at Spectrum Health.

Thank you for the work you do.

We'll call you a master trainer and co-founder of Dementia Friends, Joy Spahn.

Always a pleasure to have you discuss this topic.

- Thank you.

- Glad that you are here.

- Nice to be here.

- Let me start with you, Joy.

Tell me about you and your involvement with Dementia Friends and more.

- Sure.

Well, it's a program that is kind of under the auspices or under the wings of the Area Agency on Aging of West Michigan.

But the program is intended to help people become more aware of dementia and how they can help their communities be a little bit more dementia friendly.

It involves an hour, hour and a half long educational session and gives a nice overview of dementia and what you can do to help make your community more comfortable for folks living with dementia.

And I'm one of the master trainers for that, so I've done quite a few of those so far.

So, I'm happy to report.

- Good to be a master.

Kate, talk about you and your talents.

- Yeah, I'm a senior medical assistant with Spectrum Health Neurology.

I often am seeing patients either sometimes at the beginning or end of their journey with dementia.

We're usually the first people to see those concerns, help them through the progression of the disease, and just make sure that they're best supported through through their journey.

- Yes.

Christoph, tell us about your mom.

- Yeah.

So my mom, Ginger, was diagnosed with Alzheimer's in 2019 and at the time my dad had also been diagnosed with vascular dementia, and so I helped them get into an assisted living situation.

And then my dad passed the next year and it didn't make sense for my mom to be isolated in an assisted living facility anymore, especially during COVID.

And so I decided to become her caregiver.. And so we've been at it now for just over a year and I have learned a lot about dementia and what the daily impact of that is on her life in her clarity, you know?

So just really a great opportunity for me to learn and to give back to her, the lady who raised me, you know?

- Yeah, we'll happy to share that information.

Let's just start with a couple of definitions.

Alzheimer's, dementia.

What's the subset?

What's the umbrella?

Start with you joy.

- Sure, yup.

Well, there's actually no disease called dementia.

Dementia is an umbrella term that describes a group of symptoms.

Alzheimer's disease is the most common and accounts for about 60% to 80% of the diagnosis of dementia.

And you can actually have more than one cause of dementia going on at the same time.

You know, Christoph mentioned his parents with vascular dementia.

So that has to do with the brain activity and many strokes, and things like that, over a period of time, Alzheimer's disease actually is the accumulation of a couple of different types of protein that attacks the brain cells and causes them to kind of dysfunction and eventually die.

- Kate, at what point do you begin to see patients at your facility with this disease and of course, is it progressive?

- We hope to see people at the earliest signs of concern.

But often in our area, we're seeing people most come in during the moderate stages.

When we lose that gap from the early onset to moderate stages, there's a lot that can go on in that area.

A lot of support, a lot of potential interventions, but we're seeing most at the moderate stages when they're finally coming to us to seek some support.

- And is your role support and/or treatment?

- There's nothing that can stop Alzheimer's.

So the treatment is mainly supportive management of symptoms.

Those symptoms range per individual.

So it's very much a one to one experience with the provider, with our team, and the patient, and especially their family.

You know, being that Christoph is the caregiver.

We're often getting the reports of those concerns from the family, not the patient.

So it's a big dynamic in who we're actually working directly with especially at that moderate stage.

- Christoph, what were some first signs of your mom experiencing some changes?

- So back in 2017, my mom had two events that triggered her from trying to find out, do I have dementia?

And the first was that her mom was diagnosed with dementia.

And then the second was that she had left a burner on the stove, came back into the kitchen, realized that the burner had been left on and that it had to have been her, scared her, and so she reached out to her physician and they did a cognitive assessment at that time.

And they said, "Yeah, there's memory issues, but it's not dementia."

In 2018, then I noticed that things were starting to be a little weirder from her memory, you know?

So she had this thing that she was really excited about.

I was in town visiting and she told me about it.

And then like a half an hour later, she told me about it again as if she hadn't told me about it before.

And then maybe a couple hours later, she told me about it again as if it was the first time.

And that was when I went, "Mom, would you mind getting tested again?"

So she did.

Same thing came back, memory issues but not dementia.

In 2019, that was when things really started being obvious that there were issues.

Bills weren't getting paid on time.

Confusion between one company and another company 'cause their logos looked the same and she got them all muddled and, you know.

And so that was when I reached out to her physician and I said, "Could you initiate another exam?"

And I didn't even have my mom follow through on it herself because she wasn't capable of that logical process anymore.

And then indeed, it was.

Alzheimer's was the designation on that eval.

So it was a process of time over a few years, worsening symptoms of memory, loss of logical process, and just kind of a very organized person who suddenly wasn't.

- Joy, at what point do we begin seeking treatment?

And of course, this brings us to the, perhaps, term of an early-onset.

- Sure, sure.

It varies from person to person like what was already mentioned here because there's a lot of things that influence that has to do with your overall health, that has to do with what kind of support system you have, whether you're living by yourself or whether you're living with someone that can kind of compensate for some of those things that you forget or whatever.

A lot of times when people think of dementia, they think about it at kind of at the middle to later stages of the disease when it's pretty obvious, like what some of the things that you were describing in terms of that ability to sequence information or frequent repetitions.

It's not just always the memory pieces we think about it, but it has to do with being able to carry through with activities and that sort of thing.

But also as you described, there's a lot of signs and symptoms that people notice early on and that's not always necessarily automatically thought of as "Oh, this person has Alzheimer's disease.

They're just having some problems with their memory."

And it's often until the person starts to have difficulty with that carrying out day to day types of activities that families seek out help.

In the meantime though, they often will notice things that are going on and can become very frustrated without being able to access resources because they can see changes, but they're not evident enough yet where they're showing up in a clinical evaluation.

And so the families are thinking, "Oh, there's nothing wrong with the person.

Maybe I'm having a bad day.

Maybe that person's having a bad day."

When in reality there's that slow progression and because...

Particularly with Alzheimer's disease, because it is so slow and insidious, you see these little changes a little bit at... You know, a little bit by little bit.

But I think it's helpful for people still to be looking for some of those signs and symptoms and talking to the doctor.

A lot of times people don't have that type of self awareness that your mom had, and that's part of the disease process.

A lot of times people will think that, "Oh, the person's denying it."

You know, they're just using denial.

They don't really think there's anything wrong with them.

But of course, they do because they're just not recognizing it.

And the reality of that is that that's part of the disease process because one of the things that happens is that ability to have self-awareness.

And if you don't have that or you're losing that, it's difficult for you to recognize those signs and symptoms or those changes that are going on.

So when somebody tells you something, if you don't see that and you don't believe that, of course, they're just... You know, they're trying to pick on you or something like that.

And that actually is a piece of the disease.

So, not everyone has that self-awareness.

That's pretty common not to.

- Yes.

Kate, you have a cognition clinic.

- We do.

- Tell us a little bit more about that.

Once we are established that there's a diagnosis, you take it from there.

- We often are getting some of our more pressing referrals from a primary care physician, sometimes within our system at Spectrum or outside.

As far as the upper Peninsula, sometimes we have patients coming from Indiana.

And our cognition clinic is amazing.

We're the only health system that's offering this in our greater area in West Michigan.

And what's nice about it is it takes your initial journey.

That could be about a year long where you first see your neurologist.

Then you might see a neuropsychologist for some testing, maybe some social work pieces.

We combine all those into one four-hour appointment.

You get to see all the providers.

We get pharmacy on board, make sure the med management portion of this is maximized as well.

And we can, most of the time, come up with a diagnosis through that one four-hour appointment when we've been able to put all those pieces together.

- And the patient then leaves perhaps with the diagnosis and the plan?

- Yeah, potentially.

In the more extreme cases that we've seen are those very late stages that our providers are able to give them a diagnosis most of the time at the time of the appointment.

Our team will kinda reconvene after that big group appointment for those patients after every clinic.

And they'll go over each case individually, kinda scrutinize all the pieces that came together and the patient will come back preferably with a family member for what we call our feedback portion.

Sometimes we do this virtually if people are, you know, like I mentioned, from pretty far away.

And that's when we are able to give a diagnosis at that point for most patients.

- Yes.

What is your lifestyle like, Christoph?

We wanna talk about you as a caregiver and caring for you.

But what's been important for you to keep structured for mom?

What are some other ways that you are arranging her life?

- So one of the things that I did initially when there was this whole question of what was going to happen with my mom now that my dad had passed is I worked with a counselor to really go through the personal questioning.

Am I the right fit to do this job?

And what do I need to do for me in order to be able to maintain my own health during the time that I'm doing this caregiving.

And so I've continued to work with a counselor for myself.

So I have somebody to talk to about what the issues are of the week.

And you know, when I'm short tempered 'cause I get short tempered.

Sorry, mom.

You know, and I have breaks.

So I have a person who comes on Wednesday evenings to give me some time off.

I go to a bowling league.

I have a different person who comes in on Saturdays to give me a break and I can go spend time with my partner and we, you know, explore.

Because I have been away from Michigan for 17 years and so I'm reintroducing myself to West Michigan as well.

And then the rest of the time, I'm really just trying to keep my mom activated as best as possible.

She loves to read, so we go to the library fairly often.

She loves to visit with people.

So I try and keep her social calendar as full as she can.

She really can only handle one activity a day before getting kinda tired out.

And then after she's tired, then her brain doesn't work as well.

So the next activity wouldn't be as fulfilling for her anyway because she can't concentrate as well.

And so then the other thing that we've been doing is a podcast called "Living with Alzheimer's".

And that was one of the things that I really wanted to do for myself because I felt like I was having a lot of conversations with my friends and colleagues that I was learning that they had experiences with dementia within their families as well, but I had never heard about it.

And I was also learning in the clinics, in the trainings, and like that, and working with Alzheimer's Association.

There was a whole lot of stuff I didn't know and I had never heard.

And so I wanted a podcast as a forum to help share that information widely so that people going through the same journey would have some information about resources as quickly as possible, but also as a way to activate my mom and keep her engaged with what was happening with her and telling her story.

That kind of thing.

So there's been a lot of things, but I have good support around me and that really helps.

- I trust you'd give Christoph an A.

- I think he's done a great job.

I really admire him for seeking out information early, recognizing those signs and symptoms, and seeking out what kind of support services and what kinds of resources would be available, but also taking care of yourself.

Because that's one of the things that we always worry about with caregivers and particularly like spousal caregivers or caregivers that are older that are providing care because statistically, they're at a higher risk of dying before the person that's living with dementia does because of the stress and the strain of being a caregiver because often their own health is neglected.

They get tired.

It's hard to imagine unless you've gone through it, having somebody with you 24/7 that continually changes and how you have to adapt what you're doing and how you're relating to that person as the disease progresses.

- Kate, how was the patient dealing with perhaps even an early onset knowing that some changes are happening in my brain and I'm not remembering and yet I'm cognizant enough to know that?

How do we work through that psychologically, that this is perhaps a progressive disease?

- It's tough.

We get a lot of patients that are in that gray area where they do notice those subtle differences on their own or someone else has mentioned to them.

Kinda like how you brought it up with your mom.

Are we sure that this is just aging?

It's not always just aging.

And the least we could do is get that eval, get that baseline set, even if there's just the most minor concern and we can...

If there is a progression, we can be there to support at every stage.

And it keeps your family on board.

It keeps that clarity of who's who in your life, who's trustworthy, 'cause sometimes we lose that compass, that moral compass, along with the unfortunate progression, that decline, that we see a lot in Alzheimer's.

- Has research presented that to eat my vegetables, to exercise throughout the progress could delay the progression?

Start with you, Kate.

- In most cases that I have experience with, there is a genetic component.

There are significant lifestyle things that you can do to hope that something like this might not happen to you and they kinda have a pretty decent influence on how quickly one might progress.

If you're not taking care of yourself, you're not using your brain in positive ways, your brain is a muscle.

If you're not using your muscles, we see atrophy.

That's the shrinking.

Therefore, the Alzheimer's.

That capacity is lowering.

So, the genetic component which we do test for, there are certain chemicals like you had mentioned that we can look for and then modifiable factors as simple as sleep apnea, your diet, vitamin deficiencies.

So although we can't prevent it completely, there are some components that we can do to influence how it would affect you.

- What are the topics that brought up on the podcast that have been interesting on this journey for you?

- Yeah.

You know, we've talked about... Because I spoke with the neuropsychologist who diagnosed my mom's condition and we talked about a lot of the... How the brain is working and what's happening during the disease.

So that was a very interesting episode for me and bringing up the whole thing.

The brain is a muscle.

I had never heard it.

You know, term that way before.

We talk about sundowning, what that is, which is very interesting and sometimes frightening process because my mom at two o'clock in the afternoon can be very clear and by six o'clock doesn't know where she is.

And that's that whole process of sundowning.

Happens every day and it happens in different times and different severities.

So, that's a topic.

How you deal with that.

I haven't gotten yet into how to manage some of the confrontive kinds or argumentative kinds of states that can happen because people will potentially become... - Combative or argumentative.

- In that combative side.

And I have not had to deal with that.

My mom's a sweetheart.

But I certainly know other people who that's an issue and even getting their loved one into being diagnosed or being followed up on is a battle.

And thankfully, I don't have to fight that one.

And Kate, something you said about the early diagnosis.

Because my mom was diagnosed in that early stage, there were some medications that were able to help remedy some of the chemical issues for a time.

It won't work forever because the brain is shrinking and there aren't as many neurons for that medicine to work on after that time, but it did help bring her clarity up on a daily basis and continues to do so right now.

- Right.

- Yeah.

- Joy, dementia...

Expand on that and then tell me about Dementia Friends.

- Well, as I'm listening to these stories, I think one of the really helpful things or one of the neat things about the Dementia Friends program is that it talks about the process, but it also focuses on the life that people living with dementia are still able to have.

You know, oftentimes, we look at it as a very traumatic thing, which it is, but we don't wanna write people off really fast.

You know, people living with dementia can have a pretty full life for a long period of time.

And it's important for us to know that because one of the things that we can help people understand a little bit better is how to deal with some of those changes and behavior because it is.

It's almost like you're on a... You're coping with information that you use that worked once but then the person's onto the next stage and that's not working anymore.

But also recognizing that, but how we can help somebody living with dementia because their life can still be full and we don't want to... We wanna be recognizing that there are changes and we wanna make sure that the person is well taken care of, but we don't wanna write off their abilities too soon.

We wanna make sure that they're inclusive.

We wanna make sure that we have an understanding of the disease process so that when we are working with someone or we know someone, how we can respond better to that person.

So for example, if you're in the grocery store and you see somebody that looks like maybe they're having a difficult time picking out whatever groceries they need to.

Rather than ignoring them, say "Can I help you with that?"

It comes down to kindness and it comes down to being able to offer some assistance because people can do things for a very long time with support and assistance like what you've described.

And oftentimes, we think that because someone's not able to complete a task like they used to that they've lost the ability to do that.

When in reality, what they've lost is the ability to initiate it.

And once you kind of get them started or once you partner with them to do different tasks, something as simple as making coffee.

I mean, I've had clients before that all of a sudden they make coffee every morning and then the next morning they can't remember how to put water in the coffee maker.

So you can do things instead of saying like, "Oh, you're not making coffee anymore."

You can do things like partner with them and say, "You know, here's the craft.

Why don't you put water in this?"

And point to the faucet and do that together.

Because with some instruction and step by step kinds of things, people can do a lot of things.

And by helping empower people and helping to partner with them and support what they're doing, people can do a lot of things for a long period of time.

And whether you have dementia or not, everybody likes to be needed.

Everybody likes to feel like they're contributing to something.

And the podcast that you're doing or the socialization that you talked about, that is just so hugely important for all of us.

And so, isolating and taking things away from people that they can still do on their own is not necessarily helpful.

We just need to figure out how we can help them do what they do better.

It's gonna be different than how they did it originally, but they can still do a lot of stuff and that's what we have to recognize in folks.

- If I can piggyback, so my mom has some hair care products that have to be put on in a particular order.

And so I wrote down step one, step two, step three, and with the products, you know?

She gets out of the shower and she goes, "Oh yeah, step one is this.

Step two is this."

She's good.

And you know, I don't have to help her with that because those directions are there.

When the directions weren't there, she was confused every time 'cause she would forget that logical process.

She loves to garden and which mostly means pulling weeds.

And sometimes she doesn't remember the difference between what's the weed and what's not.

So I'll go out there, we'll get started.

I'll pull some as an example and then I'll say, "Go for it."

You know?

She'll do the rest just fine.

With a little bit of prompting, she's good to go.

- [Joy] Yeah, perfect.

- And of course, Kate would concur with that as we look to wind down on behalf of Spectrum Health.

What else do we need to share of the cognition clinic?

Big key here.

- Big key, yeah.

So cognition clinic, but we're also... As an office, we are participating in the Alzheimer's walk this coming fall.

That's gonna be October 8th.

It's our second year.

Last year was our awesome first kickoff year for it and we're so excited to be moving back into that walk again.

- Yes.

Because we know awareness is key but also funds raised.

We wanna research this until we find that cure.

- Yeah.

- I trust- - And I believe the funds raised, and correct me if you guys are more familiar, I know last year was 78% of the funds raised would go back to the support of the patients with Alzheimer's and then the remaining went to more of that admin.

But I think we might be up to 79% this year.

I could double check.

But yeah, Spectrum Health was topnotch.

I think we're in the top three right now for fundraising.

Thanks to our neurology team.

- Thank you for that.

So how do we find out more information?

- Spectrum Health Neurology.

There are links to self-referrals.

There are links to how to ask your primary care provider, how to get in touch with us so that we can communicate with that.

Maybe if you're not ready, we can communicate with your primary care provider to make sure that when the time is right, that we're there.

And we're just a phone call away through the Spectrum Health website.

- Yes, quality of life key.

Joy, what do you leave us with?

- I think all of this information's been hugely valuable.

I think one of the things that folks sometimes don't recognize is that West Michigan in particular has huge support services and services for older adults as well as folks living with dementia, from the Alzheimer's Association to the Area Agency on Aging and organizations like Spectrum.

We have research on Alzheimer's disease going on in our community at Michigan state and being able to access all of that and recognize who to contact for assistance is just huge.

So I would encourage people to reach out.

You know, if you don't want your name to be out there, then you can do that anonymously and just seek out information.

Like what Christoph was talking about, there's a lot of information.

We just don't always know how to access it, so.

- And one of the toughest parts is asking for help.

- Exactly.

And you can always call the Area Agency on Aging.

I always tell folks that's an excellent place to start because they have so many organizations that they support through the community.

So it's an excellent place to start and they'll refer you out.

- And for one who's just found out that their mom may need care.

What's the action on them?

- So for me, I've tried with this podcast to get a bunch of resources for people who are beginning this journey or who are wondering what this journey might look like if they're thinking that's in their family.

So LW for living with, ALZ for Alzheimer's.

So, lwalz.com is where the website is for the podcast and then "Living with Alzheimer's" as a podcast is on all the distribution points there.

But Alzheimer's Association resources are talked about.

You know, cognition and the testing for that.

You know, what to do with topics like sundowning, social activation, all those kinds of things are there.

And we're trying to continue that conversation for those resources.

So that's what I would point people to who want to learn more and then yeah, the Area Agency on Aging.

- Yeah, and thank you.

And what I forgot to mention was that if folks are interested in having one of these sessions, these Dementia Friend sessions, they're free.

Just contact the Area Agency on Aging and say that you would like to have one of those sessions.

We will go out and meet you wherever you are.

So we've done churches, we've done law enforcement, we've done ride share kinds of things.

So we are happy to come out and provide that piece of information for you.

It's about an hour, hour and a half.

And it's free.

- Good use of time.

We'll take anything free.

Christoph, is there laughter in the house?

- Totally.

We laugh about a lot of things.

They're usually about cookies.

- Oh?

- Yes.

My mom is a big fan of chocolate chip cookies and there's usually a joke about a cookie because that's just how she rolls.

- Wonderful.

Now we'll know what to bring Ginger.

- [Christoph] That's right.

- When we stop- - Yes.

Come with your chocolate chip cookie and you are her friend.

- For sure.

Well, we wanna put you all out of a job one day and that day will come one day.

But until then, thank you for your service, Kate.

- Absolutely.

- To Christoph, and enjoy on behalf of well living with Alzheimer's, dementia, and more.

So thank you for you.

And thank you for you for, of course, watching, supporting this "Family Health Matters".

Have a nice day.

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